My Dad Has ALS

Dad / Poppie / Husband / Son ~ all of these titles affectionately describe the important role that Rick plays in the lives of his loved ones. For those of you that know him, my Dad is known to be a funny guy with a big smile, who loves to tell jokes and make people laugh. He is the guy who would remember that one thing you said you needed/wanted and would surprise you months later, with no expectation of anything in return. Rick Haas has a big heart, he loves his daughter (me) so much and would do absolutely anything for me. He is recently a Poppie (grandfather) to my beautiful son Quinn. They have so much fun sitting together while Poppie makes silly noises with him, tells him that 'he's a good boy' and that he 'looks good', all while Quinn smiles and laughs and stares at Poppie's wild hair (which he decided to grow out after his diagnosis). 

To say that the last two years have been challenging for Rick, and for our family after receiving his devastating ALS diagnosis is an understatement. Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. It is a heartbreaking disease to watch a loved one suffer through, and my goal is to help make my Dad's quality of life the best that we possibly can in the time that we have left with him. 

This is where your helpful donations would mean the absolute world to him and our family. I am raising funds for several key resources that will have a hugely positive impact on his ability to 'speak' and 'get around' while keeping a semblance of independence as speech and motor skills decline. 

Your generous donations will go towards the following which we will need starting in the immediate future: 

1) Electric wheelchair rental
2) Wheelchair attachments for Eye-drivomatic, Eye-to-speech capabilities
3) Ventilator for home use
4) Portable oxygen attachment for his wheelchair 
5) Home care for a nurse which will allow my Mom some much needed relief/support
6) Ramp installations at their bungalow (for the front door and backyard as well as our family cottage) 
7) Physical therapy such as massage for pain relief in his neck and back 

Since the diagnosis, my Dad has not been in a great place mentally. His mental health is suffering, he has been depressed, withdrawn, angry, emotional, and has lost interest in most things that he used to love: food, music, hanging out and talking/laughing with friends, going on vacation. The one thing these last 7 months that has brought joy, happiness, hope, and love to my Dads life is his grandson Quinn. These last few months especially, we have made sure to FaceTime, and visit in person as much as we can to allow my Dad to bond with Quinn, and so that we can make the most of these special moments together as a family. I know it is emotional for my Dad because he knows he won't get to see his grandson grow up, but these years we do have together mean the world to me, and I know they will mean the world to Quinn when we can show him photos and videos with his loving Poppie. 

Rick used to love having spaghetti every Friday night and making his signature sauce, he loved bacon and eggs, pancakes (still does), burgers and fries, steak and potatoes, but sadly, the progression of the disease has left him with a small appetite, a loss of taste, trouble chewing and swallowing causing him to choke. He doesn't enjoy eating anymore and it takes him a long time to eat a small amount of food, which in turn has resulted in major weight loss. He will be getting a feeding tube soon in order to prolong his health and help ensure he gets nutrients to help keep his weight on. Weight loss progresses the disease quicker, and so we are eager to have the tube installed and hoping that Covid doesn't affect our timeline in order to get this procedure done soon. 

My Dad gets frustrated and upset because he can no longer remember the words to his favourite songs - this is a man who has thousands of records collected, who would go to multiple concerts every year, who has lived for music his whole life. I have tried to show him on the Apple Music app that you can see the lyrics while listening to the songs. His memory loss makes him forget sometimes but my Mom and I are working on that with him. One thing I love is that my parents always have music playing at home, and my Dad is always tapping his finger to the songs, which I know brings him a little bit of comfort during this hard time. 

My parents have a biweekly Zoom meeting with their friends, which I think helps keep my Dads spirits up a bit, however I know it is emotional for him because he can't contribute to the conversations because his speech is mostly gone, and only my Mom and I can really understand what he says now. Soon his speech will be gone completely. As a man who was born in the 50's, he is not confident with technology even though we try to encourage him to text me and to use his email. This is why the eye-movement technology would be so helpful for him as he loses his ability to speak and is unable to learn new technology using his hands and memory. 

Lastly, while unfortunately Covid is preventing anyone from travelling right now, my Dad loves nothing more than laying on a beach tanning, and swimming in the ocean. Having a terminal illness that requires insurance for medical support, makes travelling (once we are able to do so again) very challenging for us. I pray that we can take him on one last vacation somewhere once Covid allows us to. 

Thank you so much for hearing our story, for sharing our story, for your love, support, prayers, and positive thoughts for my amazing and special Dad - Rick Haas.  It truly means more than you will ever know, but I thank you for your generosity and willingness to help. We are so grateful. 

Much love,
Darryl, Katherine, and Rick Haas 

You can learn more about ALS here: https://www.als.ca/